Development of a decision aid for young canadians diagnosed with breast cancer who are at risk of infertility following cancer treatment.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 108-108
Author(s):  
Brittany Speller ◽  
Marcia Facey ◽  
Amanda Sissons ◽  
Corinne Daly ◽  
Erin Diane Kennedy ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Support ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Decision Aid ◽  
Breast Cancer Survivors ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Support Resources ◽  
Young Breast Cancer

108 Background: Young breast cancer patients are at risk of temporary or permanent infertility following the administration of gonadotoxic cancer treatments. Currently patients do not feel they receive enough information to make informed fertility decisions before treatment. We aim to determine the fertility-related information health care providers and breast cancer survivors consider valuable to include in a Canadian decision aid (Can-DA) for young breast cancer patients by reviewing existing decision support resources. Methods: A qualitative descriptive approach was used to evaluate 6 decision support resources created in other jurisdictions. Using purposeful sampling, 8 multi-disciplinary health care providers and 8 breast cancer survivors from across Canada evaluated 1 to 2 decision support resources in structured interviews. Interviews were conducted in-person and by telephone from March to June 2016 and ranged in length from 30 to 90 minutes. Interviews were transcribed verbatim, organized in NVivo, and analyzed deductively using the pre-defined sections of the interview guide as a framework. Results: Each decision support resource had valuable components to adapt for the Can-DA. Participants valued the inclusion of Canadian-specific and accurate information on resources for additional support and the success rates and cost ranges of fertility preservation procedures. There were mixed views on the impact and value of including in-depth fertility information such as adoption and other fertility-related options after treatment. Discrepancies were also seen on the value of personal stories and an explicit values clarification exercise. There was consensus on the inclusion of only pertinent fertility-related information that does not replicate information in supplementary patient education material to avoid overwhelming patients. Conclusions: The evaluation provided valuable insight on the information and design features to consider for the Can-DA. Findings will be used in combination with the International Patient Decision Aid Standards criteria to ensure the Can-DA meets the fertility information needs of young breast cancer patients in Canada.

scholarly journals The "Begin Exploring Fertility Options, Risks and Expectations" (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Brittany Speller ◽  
Kelly Metcalfe ◽  
Erin D. Kennedy ◽  
Marcia Facey ◽  
Ellen Greenblatt ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cancer Patients ◽  
Decision Aid ◽  
Development Process ◽  
Supplementary Information ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Premenopausal Breast Cancer ◽  
Fertility Decision

Abstract Background Premenopausal breast cancer patients are at risk of treatment-related infertility. Many patients do not receive sufficient fertility information before treatment. As such, our team developed and alpha tested the Begin Exploring Fertility Options, Risks, and Expectations decision aid (BEFORE DA). Methods The BEFORE DA development process was guided by the International Patient Decision Aids Standards and the Ottawa Decision Support Framework. Our team used integrated knowledge translation by collaborating with multiple stakeholders throughout the development process including breast cancer survivors, multi-disciplinary health care providers (HCPs), advocates, and cancer organization representatives. Based on previously conducted literature reviews and a needs assessment by our team – we developed a paper prototype. The paper prototype was finalized at an engagement meeting with stakeholders and created into a graphically designed paper and mirrored online decision aid. Alpha testing was conducted with new and previously engaged stakeholders through a questionnaire, telephone interviews, or focus group. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. Results Our team developed an 18-page paper prototype containing information deemed valuable by stakeholders for fertility decision-making. The engagement meeting brought together 28 stakeholders to finalize the prototype. Alpha testing of the paper and online BEFORE DA occurred with 17 participants. Participants found the BEFORE DA usable, acceptable, and most provided enthusiastic support for its use with premenopausal breast cancer patients facing a fertility decision. Participants also identified areas for improvement including clarifying content/messages and modifying the design/photos. The final BEFORE DA is a 32-page paper and mirrored online decision aid (https://fertilityaid.rethinkbreastcancer.com). The BEFORE DA includes information on fertility, fertility options before/after treatment, values clarification, question list, next steps, glossary and reference list, and tailored information on the cost of fertility preservation and additional resources by geographic location. Conclusion The BEFORE DA, designed in collaboration with stakeholders, is a new tool for premenopausal breast cancer patients and HCPs to assist with fertility discussions and decision-making. The BEFORE DA helps to fill the information gap as it is a tool that HCPs can refer patients to for supplementary information surrounding fertility.

scholarly journals Social Relationships and Its Association With Affective Symptoms of Women With Breast Cancer: a Scoping Review

2021 ◽  
Author(s):  
Yesol Yang ◽  
Yufen Lin ◽  
Grace Sikapokoo ◽  
Se Hee Min ◽  
Nicole Caviness-Ashe ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Patients ◽  
Social Relationships ◽  
Health Care Providers ◽  
Scoping Review ◽  
Sample Type ◽  
Cognitive Symptoms ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Affective Symptoms

Abstract Background: Problems in affective and cognitive functioning are among the most common concurrent symptoms that breast cancer patients report. Social relationships may provide some explanations of the clinical variability in affective-cognitive symptoms. Evidence suggests that social relationships (functional and structural aspects) can be associated with patients’ affective-cognitive symptoms; however, such an association has not been well studied in the context of breast cancer. The purpose of this scoping review was to address the following question: What social relationships are associated with affective-cognitive symptoms of women with breast cancer? This scoping review used the framework proposed by Arksey and O’Malley and PRISMA-Sc. Extracted data included research aims, design, sample, type and measures of social relationships (functional and structural), and the association between social relationships and affective-cognitive symptoms. Results: Of sixty-five included studies, none of them focused on cognitive symptoms of breast cancer patients; thus, in this review, we focused on only the affective symptoms of breast cancer patients and their association with patients’ both aspects of social relationships. Conclusion: Our findings reveal that positive social relationships benefit in mitigating affective symptoms of women with breast cancer. Thus, health care providers need to educate patients about the importance of building solid social relationships and encourage them to participate in a supportive network of friends and family members.

scholarly journals To which extent do breast cancer survivors feel well informed about disease and treatment 5 years after diagnosis?

2020 ◽  
Author(s):  
S. L. Herbert ◽  
◽  
A. Wöckel ◽  
R. Kreienberg ◽  
T. Kühn ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care Providers ◽  
Information Needs ◽  
Breast Cancer Survivors ◽  
General Information ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Linear Regression Models ◽  
Written Information ◽  
Medical Tests

Abstract Objective In this study, we investigated to which extent patients feel well informed about their disease and treatment, which areas they wish more or less information and which variables are associated with a need for information about the disease, medical tests and treatment. Methods In a German multi-centre prospective study, we enrolled 759 female breast cancer patients at the time of cancer diagnosis (baseline). Data on information were captured at 5 years after diagnosis with the European Organisation for Research and Treatment of Cancer (EORTC) Information Module (EORTC QLQ-INFO24). Good information predictors were analysed using linear regression models. Results There were 456 patients who participated at the 5-year follow-up. They reported to feel well informed about medical tests (mean score 78.5) and the disease itself (69.3) but relatively poorly about other services (44.3) and about different places of care (31.3). The survivors expressed a need for more information concerning: side effects and long-term consequences of therapy, more information in general, information about aftercare, prognosis, complementary medicine, disease and therapy. Patients with higher incomes were better informed about medical tests (β 0.26, p 0.04) and worse informed with increasing levels of fear of treatment (β − 0.11, p 0.02). Information about treatment was reported to be worse by survivors > 70 years old (β -0.34, p 0.03) and by immigrants (β -0.11, p 0.02). Survivors who had received additional written information felt better informed about disease, medical tests, treatment and other services (β 0.19/0.19/0.20/0.25; each p < 0.01). Conclusion Health care providers have to reconsider how and what kind of information they provide. Providing written information, in addition to oral information, may improve meeting those information needs.

scholarly journals Inquiry and computer program Onko-Online: 25 years of clinical registry for breast cancer at the University Medical Centre Maribor

2019 ◽  
Vol 53 (3) ◽  
pp. 348-356
Author(s):  
Darja Arko ◽  
Iztok Takac
Keyword(s):  
Breast Cancer ◽  
Computer Program ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Cancer Registries ◽  
International Standards ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Clinical Registry

Abstract Background High-quality routine care data collected in the clinical registry play a significant role in improving the management of cancer patients. Clinical cancer registries record important data in the course of cancer diagnosis, treatment, follow-up and survival. Analyses of such comprehensive data pool make it possible to improve the quality of patients care and compare with other health care providers. Methods The first inquiry at the Department of Gynaecologic and Breast Oncology of the then General Hospital Maribor to follow breast cancer patients has been introduced in 1994. Based on our experience and new approaches in breast cancer treatment, the context of inquiry has been changed and extended to the present form, which served as a model for developing a relevant computer programme named Onko-Online in 2014. Results During the 25-year period, we collected data from about 3,600 breast cancer patients. The computer program Onko-Online allowed for quick and reliable collection, processing and analysis of 167 different data of breast cancer patients including general information, medical history, diagnostics, treatment, and follow-up. Conclusions The clinical registry for breast cancer Onko-Online provides data that help us to improve diagnostics and treatment of breast cancer patients, organize the daily practice and to compare the results of our treatment to the national and international standards. A limitation of the registry is the potentially incomplete or incorrect data input by different healthcare providers, involved in the treatment of breast cancer patients.

scholarly journals Overexpression of PBK/TOPK Relates to Poor Prognosis of Patients With Breast Cancer: A Retrospective Analysis

2022 ◽  
Author(s):  
Liang Qiao ◽  
Jinling Ba ◽  
Jiping Xie ◽  
Ruiping Zhu ◽  
Yi Wan ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Poor Prognosis ◽  
Clinicopathological Parameters ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Cancer Management ◽  
The Difference ◽  
The Relationship

Abstract Background: PDZ-binding kinase/T lymphokine-activated killer cell-derived protein kinase (PBK/TOPK) is a potential prognostic indicator for patients with breast cancer. The objective of the present study was to explore the relationship between PBK/TOPK expression and clinicopathological indicators as well as the survival of patients with breast cancer.Methods: Immunohistochemical staining was used to detect the expression of PBK/TOPK in 202 cases of breast cancer tissues. The relationship between PBK/TOPK and clinicopathological parameters was evaluated using Spearman's rank-order correlation. The difference in PBK/TOPK expression among different molecular types was analyzed with the chi square test. Kaplan-Meier analysis was used to create a survival curve and the log rank test was used to analyze the overall survival (OS) and disease-free survival (DFS). Prognostic correlation was assessed using univariate and multivariate Cox regression analyses.Results: Among 202 breast cancer samples, PBK/TOPK was expressed ('+' and '++') in 182 samples (90.1%). In addition, the histological grade, TNM stages, lymph node metastasis, estrogen receptor (ER), progesterone receptor (PR), human epidermal growth factor receptor 2 (HER-2), and Ki-67 were positively associated with PBK/TOPK expression. With regard to the molecular type, the expression of PBK/TOPK is different. The expression level of PBK/TOPK was negatively correlated with both the OS and DFS of breast cancer patients. The difference in the above results is meaningful (P<0.05).Conclusions: PBK/TOPK is over-expressed in breast cancer and the expression is closely related to the clinicopathological characteristics of the disease. Breast cancer patients with high expression of PBK/TOPK have a poor prognosis. Therefore, health care providers can optimize breast cancer management using this indicator.

Effect of fertility concerns on tamoxifen use in young survivors of breast cancer.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 572-572
Author(s):  
Natalia Llarena ◽  
Omar Nunez ◽  
Anna Kane ◽  
Jacqueline Sara Jeruss
Keyword(s):  
Breast Cancer ◽  
Cancer Patients ◽  
Fertility Preservation ◽  
Breast Cancer Survivors ◽  
Negative Impact ◽  
Treatment Plan ◽  
College Education ◽  
Tamoxifen Treatment ◽  
Breast Cancer Patients ◽  
Young Breast Cancer

572 Background: For premenopausal patients with ER+ breast cancer, a 5-year course of tamoxifen results in a 47% reduction in annual recurrence risk and a 26% reduction in annual mortality. Despite these benefits, adherence rates for tamoxifen are low, particularly among younger women. We hypothesize that fertility concerns are causally related to the poor tamoxifen adherence rates observed among young breast cancer survivors. Methods: With IRB approval, a retrospective analysis of 535 women with breast cancer between 2000-2012 was undertaken. Patients were younger than age 46, premenopausal and had ER+ breast cancer. 138 patients did not complete a 5-year course. Patient and provider factors that influenced tamoxifen initiation and adherence were reviewed: (1) evidence of referral to a fertility specialist; (2) documentation of discussion about tamoxifen-related fertility concerns; (3) agreement to take tamoxifen; (4) duration of tamoxifen use. Phone interviews conducted with 27 patients focused on lack of initiation or early discontinuation. The Log-rank (Mantel-Cox) test was used to compare Kaplan-Meier curves and generate hazard ratios. Results: Of the 138 patients who did not complete 5 years of therapy, 38 (27.5%) failed to initiate or discontinued tamoxifen secondary to fertility concerns. Only 114 (21.3%) charts documented referral to a fertility specialist. Patients who expressed a desire to maintain fertility or to have children in the future (115 patients, 21.5%) were more likely to discontinue tamoxifen treatment (HR=2.7, p=0.001). Other critical factors included being unmarried (HR=1.9, p=0.011) and lack of college education (HR=2.5, p=0.0008). Major themes from phone interviews: (1) patients felt they were not adequately informed about fertility preservation and had to pursue information independently; (2) patients did not initiate/resume tamoxifen postpartum because of inadequate physician guidance. Conclusions: Concerns about fertility have a significant negative impact on the initiation and adherence to tamoxifen for young breast cancer patients. Efforts to improve tamoxifen adherence among young cancer patients should include prioritization of fertility preservation as part of the treatment plan.

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